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Development of a cancer pain self-management resource to address patient, provider, and health system barriers to care

Published online by Cambridge University Press:  23 April 2019

Tim Luckett ,
Patricia M. Davidson ,
Anna Green ,
Natalie Marie ,
Mary-Rose Birch ,
John Stubbs ,
Jane Phillips ,
Meera Agar ,
Frances Boyle  and
Melanie Lovell
Tim Luckett*
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
Patricia M. Davidson
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia School of Nursing, Johns Hopkins University, Baltimore, MD, USA
Anna Green
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
Natalie Marie
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
Mary-Rose Birch
Affiliation:
HammondCare, Sydney, New South Wales, Australia
John Stubbs
Affiliation:
CanSpeak, Sydney, New South Wales, Australia
Jane Phillips
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
Meera Agar
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia Ingham Institute for Applied Medical Research, Sydney, New South Wales, Australia South Western Sydney Clinical School, University of New South Wales, Sydney, New South Wales, Australia
Frances Boyle
Affiliation:
Patricia Ritchie Centre for Cancer Care and Research, Mater Hospital, Sydney, New South Wales, Australia Sydney Medical School, The University of Sydney, Sydney, NSW, Australia
Melanie Lovell
Affiliation:
HammondCare, Sydney, New South Wales, Australia Sydney Medical School, The University of Sydney, Sydney, NSW, Australia
*
Author for correspondence: Tim Luckett, BSc, PhD, University of Technology Sydney, Faculty of Health, Building 10, Level 7, 235-253 Jones St, Ultimo, NSW 2007, Australia. E-mail: [email protected]
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Abstract

Objective

The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as “catalysts” for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system.

Method

The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice; two systematic reviews of cancer pain needs and education; a desktop review of online patient pain diaries and other related resources; consultation with stakeholders; and interviews with patients regarding acceptability and usefulness of a draft resource.

Result

Findings suggested that an optimal self-management resource should encourage pain reporting, build patients’ sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these; and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support.

Significance of results

Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.

Keywords

Cancer painPatient educationSelf-efficacySelf-management
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 4 , August 2019 , pp. 472 - 478
Copyright
Copyright © Cambridge University Press 2019 

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